I am 13 and i have Ankylosing Spondylitis. i wish my teachers believed me when i am in pain!
It’s maddening when people don’t believe us. I call it the arrogance of the healthy.
Love your scarf and admire your courage.
Michelle Butler Hallett said this on July 12, 2012 at 6:36 pm | Reply
its hard to be young and have AS i was diagnosed when i was 14.. you must be a strong girl. keep fighting 🙂
Alyssa said this on July 12, 2012 at 6:50 pm | Reply
Thank you for sharing your story. I am sorry that you are dealing with this at such a young age, but I am glad that you were able to be diagnosed early on. Unfortunately, many of us go through years of suffering, before someone finally recognizes the symptoms of AS. I hope that your teachers finally start to take you seriously, and I hope you know that you are NOT alone.
Kim Daniels said this on July 12, 2012 at 7:05 pm | Reply
Thank you so much for sharing your story with us. I hope that you will always remember that you now belong to a big family of AS Aunts, AS Uncles, AS Cousins and of course me the AS MAMMA or grandmother in this case. Please know that if you ever need anyone to talk to we are always here.
Cookie Has A.S. said this on July 12, 2012 at 6:47 pm | Reply
H, Cookie is right, there are a lot of people in this AS family. Sorry to hear that you have this disease and I hope your teachers become more compassionate. Maybe they just need some education? Maybe you could gather some information about AS and give it to them to study? Tell them that there may be a “pop quiz”. lol Ok, maybe not a quiz but it sounds like they do need educated on this disease. I hope things work out for you. Take Care #472
Jacque #472 said this on July 12, 2012 at 7:29 pm | Reply
Welcome to the group! I am sorry that your teachers do not believe you. All of us do! Sincerely, Stephania
Stephania Ford said this on July 12, 2012 at 7:31 pm | Reply
You should make your parents have a meeting with your principal or teachers so your parents could help explain the gravity of your situation. I know what it feels like so thats what I did and it helped my whole situation so very much. Hope this helps 🙂
Justin Hoffman-Gosselin said this on July 12, 2012 at 11:34 pm | Reply
Thank you for sharing your story. And I too, am sorry that you have to deal with AS at such a young age. In fact, now you can have the proper medications that can help you and also know how to keep your body from hunching over. Keep standing TALL !!
We have a good friend that lives in Eastbourne, and many years ago when we lived in London, we visited there, it’s a beautiful little town.
I wish you all the Best, and Welcome to our AS family, where everyone understands how you feel, you are not alone!
Hedy Francois said this on July 12, 2012 at 7:35 pm | Reply
Thank you so much for sharing your story. Maybe you can tell your teachers that July is actually Juvenile Arthritis Awareness Month and ask them to learn a little about juvenile spondylitis.
Here’s a link you can share – http://www.spondylitis.org/about/juvenile.aspx
Also, I wanted to share a video created by another young lady with AS, Grace. Here is her story – http://www.youtube.com/watch?v=l_Z2r4YvR3g
Let us know if we can help. You are so brave for sharing this with everyone! Thank you!
Spondylitis Association of America
elin said this on July 12, 2012 at 8:00 pm | Reply
Thank you so much Elin, means the world to me.
Cookie Has A.S. said this on July 12, 2012 at 8:24 pm | Reply
Thank you for sharing your story with us all how brave you are. Hannah l live in Bromley in Kent in UK l also know lots of people near to you who have AS no one as young as you though. Hannah we have a charity called NASS
http://www.nass.co.uk and Debbie who is the Director is a lovely lady very trendy and has daughters around your age l know she would love to hear from you would love to hear from you and l know the NASS team will be happy to try to explain to your teachers what Ankylosing Spondylitis is .
Please willl you email me so l can put you in touch with Debbie xxx
Gillian Eames said this on July 12, 2012 at 8:18 pm | Reply
Thank you so much Gillian, I knew I could count on you, it means the world to me!
Cookie Has A.S. said this on July 12, 2012 at 8:23 pm | Reply
you are a brave beautiful young lady.
Keep on fighting.
Sam dodd said this on July 12, 2012 at 8:49 pm | Reply
As a school Principal in the USA, we are required to provide a special plan for accommodations at school. It is a way that the teacher, office and even cafeteria staff can be educated and involved with helping a child with a disability. I have found that teachers are eager to help once the understand the problem. We are required to meet at least once a year to make sure the actions we have in place are effective. We call them 504’s in reference to the law that requires us to follow the plan. Have your family check into laws in the UK that protect people with disabilities/medical diagnosis. I strive to protect these students and that always starts with information and a good plan – legal or not.
Hope this helps.
Principal52 said this on July 13, 2012 at 1:45 am | Reply
Thanks for sharing your story. I like your. photo. IT must be hard to be only 13 and have so much pain. You are brave.
Joy Last said this on July 12, 2012 at 9:54 pm | Reply
I’m a mom of 3 daughters one of them your age and I have Ankylosing Spondylitis. I know that there is a chance that one of my daughters might one day develop this disease so as a mother and someone who knows your pain this breaks my heart. Praying for you and thinking of you! Stay strong!
Mandy said this on July 12, 2012 at 10:22 pm | Reply
I was the same when I was at school I to wish that my teacher believe me but that was in the 60s there is know excuse today as a lot more is know about it but good luck to you and hope things stay fine for you..
Peter Nuttall said this on July 12, 2012 at 10:48 pm | Reply
I am sorry that your teachers do not take you seriously, they do not understand what they do not experience first hand. Ignorance is not always bliss. You are a beautiful young lady, and only you know how you feel, do not let anyone bring you down; STAND TALL! know that we are always here should you need someone to listen to you. One more A.S. Warrior has entered the fight! ❤
Ana Lorrah said this on July 12, 2012 at 11:45 pm | Reply
thank you for sharing with us, I hope you will find some other people you can relate to in the AS communities.
Lindsay Cairns said this on July 13, 2012 at 12:14 am | Reply
My 14 yr old daughter has AS and I do a lot of the talking for her. I spoke personally to each and every one of her teachers about her pain and especially explained that it changes from day to day – sometimes she can’t write, sometimes she is late because she can’t walk quickly enough to a far away clasroom, sometimes she is just in so much in pain that she can’t concentrate… When there is something specific, I write a group email to all the teachers at once telling them what is going on. My main message is that she is NEVER making it up, she has enough to deal with without inventing more!
Thank you for writing your story – I hope my daughter will too in time.
You are a beautiful and strong young person. I wish you all the best,
Nikki Zoureff Aharonian said this on July 13, 2012 at 2:43 am | Reply
if i can offer any advice any time just ask i have this thing over 25 yrs now
Dermot Walsh said this on July 13, 2012 at 6:42 am | Reply
Its easy to say “stay strong” but a lot harder to do it. We know what your going through with the non-believers.
We believe you, we believe in you and you are a true survivor of much more than anyone else can ever claim.
Reach out any time
Susan Shubert said this on July 13, 2012 at 3:08 pm | Reply
you will have to be very strong to deal with AS. I know its hard. You are lucky that now there is so much more the Drs can do for you so hopefully you wont suffer too much. We are all here for you. take care .. hugs from Germany
Sally Ann Beck said this on July 13, 2012 at 4:09 pm | Reply
my name is Nadean I also have AS. I work as a school nurse. I’m sorry your teachers don’t always believe you when you’re in pain. You might want to ask your school Nurse to talk with your teachers and educate them on the nature of our disease. You are a beautiful young lady and I will keep you in my prayers.
imnadean said this on July 15, 2012 at 1:48 am | Reply
Maybe you can have your mom or dad print up a letter that is on the ASa website, it is and open letter written to explain what this is like for all of us. It might be very helpful to you, because it tells it like it really is. Good luck punkin. let me know how it goes. Suzanne
Suzanne said this on July 15, 2012 at 6:07 am | Reply
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